I hurt in every fibre of my body, from head to toe.
There is no reason for it, other than my disorders.
All my muscles are inflamed, most of my joints hurt, elbows, hips, knees, even my ankles. I’m told they think I also have Fibromyalgia, just another problem to add to my long list.
I’ve been waking up constantly throughout the night, from terrible back pains.
I have had to take morphine twice this morning, and it still only takes the edge off.
I just want to break down and cry, I desperately need to be held and comforted. I need to be cuddled and cared for, but I’m mostly alone.
I get scared and confused, sometimes I just sit with no television or radio on. The silence helps, no electrical waves or vibrations through the air.
My body spasms hurt, my arms and calf muscles are the worst today. Plus I have white noise in my left ear, the electrical buzzing noise. It drives me mad!
I’m sorry for moaning, but I feel so alone at times. I try to fill my days with reading up on neurological information, to try to understand the reasons behind the why, the what, the wherefore!
Today I feel blocked, which means I can’t take information in. I cannot do things I need to, just even eating because it takes effort to make and eat food.
My hands are hurting now, and all I am using is a finger tip to type. It takes time, but I change fingers because yes, even my finger tips hurt. My hands get swollen, it is hard to move my fingers. My hands move more as a whole like a puppet, the shape depends upon if the muscles have pulled my fingers into my palms. My left is pulled in today, my right is more open. They both hurt, I hurt.
I take so many tablets for different things, but I still live in daily constant pain.
My Dystonia and Functional Dystonia is pulling my muscles. My Functional Movement Disorder, is causing my anxiety to increase which doesn’t help my head and therefore my Functional Disorder movements.
I feel I have no where left to go, no one is helping me. I’m just left on tablets, and other medications. I get my Botox Injections every three months, and see my Neurology Consultant now six monthly. They obviously feel they have done all they can, as I see a Neuropsychologist too, which is helping sort my head out I guess, to a degree.
The pain clinic seems to have wrote me off, as after the steroid facet joint injections in my back didn’t work as well as previously. They applied to another hospital the Salford Royal, for me to have help with my pain management. The lady from the hospital that runs it, rang and spoke we me about what it involved. She said after reading my form, she didn’t think I was a suitable candidate. I had to agree, as it was group sessions and the patients were expected to get on the floor. Along with doing other movements, the lady who ran it didn’t think I would be physically able to do everything the course involved. It’s hard enough for me to get up and down into a chair, never mind the floor!?
Plus after my last back injections in March, I got an arranged phone appointment with a nurse from the pain clinic, asking how I was and how I felt the injections had gone. I said they only seemed to work 50% in comparison to the previous injections I’d had. I also told her I was getting electric shocks up my back, and did she think these were anything to do with the injections touching my nerves? She said she didn’t know, and that she would arrange for me to have another appointment made to be seen at the pain clinic. Weirdly, I haven’t received another appointment as yet!
I do however have my ongoing appointments, with my Neuro Physiotherapist. He is helping to get my leg muscles working better, by repeating small exercises in the hope that my brain will make new neural pathways by (neroplasticity) from remembering the repetitive movements.
I’m doing best I can, but I have nothing left. I feel empty, apart from the tears.
It has taken all day to write this, from mid morning until evening!
I am sad, I feel so very, very sad. There is nothing left to say.
Dealing with everything makes me tired, and I’m feeling really down and sad at this time in my life, because nothing seems to get better.